Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.

I have had restless legs for the past 6 years of so. It started off as occasional and mild, and in the past year it became nightly and severe. I had a sleep specialist prescribe me ropinirole, but after reading about it in this forum, I quickly got off of it and began a search for a natural solution.

During the same 6 years I also stopped eating meat and my ferritin levels dropped. Supplements didn't help, so I hoped that by going back on meat, my iron would improve (it did) and my RLS would stop (it didn't).

Then I tried going gluten-free and dairy-free. This helped some at first, but then it didn't. During this time I started keeping a food diary and began noticing a correlation between what I ate and how bad my legs were at night. Tomatoes, red peppers, asparagus, turmeric and spinach are big triggers. At first I thought I just might have some food allergies and if I isolated them, then all would be ok.

I tested positive for SIBO and have since learned about Leaky Gut as well. Leaky gut can be caused by SIBO and is basically increased intestinal permeability and one of the symptoms of it is food sensitivity. The toxins from certain foods leak into my body and cause discomfort in my joints and RLS at night.

Since my diagnosis, I have been on a very restrictive diet called the SIBO BiPhasic Diet. I started at the restrictive level, and also omitted the foods I'm sensitive to. My SIBO has not been cured yet, but my RLS is near non-existent.https://sibotest.com/handouts/SIBO_Diet_FINAL.pdf

Apparently, once my SIBO and leaky gut is cured, I will be able to eat whatever I want, but may want to avoid foods that cause leaky gut: gluten, processed sugar and dairy.

There is a cure for SIBO, it involves antibiotics or herbal antibiotics (just as effective as traditional antibiotics) and diet. Leaky gut can also be cured. There are some amazing Functional Medicine and Naturopathic Doctors that specialize in this. I still have a way to go in my recovery, but I can't tell you how relieved I am to be treating this and I truly believe the majority of us can be RLS free.

Thanks for that information. Is the sibo diet similar to the fodmap diet which is used in the treatment of ibs? I have seen a number of people recommend that diet strongly when it comes to rls. I keep meaning to try it but haven't managed to get myself organised for it.

I wish I had been as successful as you seem to be in getting rid of SIBO, and even more that it had that effect on my RLS/WED. My GP sent me to a naturopath to be tested for SIBO by a urinalysis that is not approved for use by doctors. (That doesn't mean it doesn't produce valid results, it means it hasn't been proven to produce valid results, as I understand it. ) I apparently had everything - yeast, bacteria that shouldn't be inside me at all, & bacteria that were supposed to only be in my large intestine.

She did blood tests that suggested certain food sensitivities, but that method is not only unproven but I think has been shown to be defective. I was already gluten free and dairy free, free of added sugar and most "chemical" additives, low in fruits and starches, high in veggies fats and proteins (since before I met her). Because of those tests, I also gave up eggs and something else - I forget now.

Like you, I looked up a lot of information on SIBO. I realize that there is no test for SIBO that is definitive. The breath test give lots of false negatives. Even sticking a sampling device up or down one hole or the other to get an actual sample of the fluid in your small intestine can give false negatives - the small intestine is very long and the microbe overgrowth does not necessarily fill all or even most of it. And the urinalysis is unproven. It tests for substances that are produced by certain microbes, such that if they're found in your urine, you must have those microbes in your gut AND have leaky gut (for the metabolites to get into your blood and then your urine).

I chose the "natural" anti-microbials, but that might have been a bad choice because when I later looked the ingredients up, they didn't seem to have very strong antimicrobial properties. I was also given enzymes that broke down biofilms, a protective barrier behind which colonies of bacteria grow. Clearly, if this worked, I would be killing my good bugs as well as the bad ones, yet she didn't have a plan for me to re-populate other than simply taking a probiotic (a restricted one, that didn't have any bacteria of the kinds that had moved into my small from my large intestine).

I followed her orders to the letter and spent lots of money and over a year on it. For months I had severe bloating every time I ate, but gradually it got better and I began to think the SIBO was gone. My symptoms had always been pain after eating, and that seemed to be gone. Then it all came back with a vengeance after 3 weeks of eating more grain than I was used to. But she didn't put me back on antimicrobials, instead she -- well, long story short, I lost faith in her.

Instead, I started eating raw fermented food every day, and that alone (while keeping on the same diet otherwise) seems to have dealt with it. I doubt it's gone completely, because every few months I will get stabbing pains after eating. It never has anything to do with what I eat - it's just the fact of eating. But it was so common before that I planned my life around it, whereas now it's unusual.

I Think the raw ferments had more to do with fixing it than the bucketloads of pills I took. But my WED/RLS changed not at all. The initial dietary change had a big impact on my WED symptoms - I was able to cut my medication in half. But since then, nothing I do seems to affect it much. So you and I seem to have differences in the underlying causes of our disease.

I hope you keep posting about your SIBO - WED/RLS adventures. I think the whole-body approach to medicine can reveal solutions that seem impossible to find when looking at each bit or piece of the organism. My little bit of research tells me our guts are as important as our brains to our proper functioning.

Badnights - I actually have similar symptoms to you, I separate them into SIBO reactions and RLS reactions. The stabbing bloated SIBO reactions are more under control now on the BiPhasic diet with the help of digestive enzymes. Even then, there are a few foods that I still have SIBO reactions to (cabbage and eggs). I'm supposed to limit the raw food, but I think I really can't tolerate any right now, and fermented is not allowed until I finish the treatment.

I'm definitely nervous about not getting the SIBO or living with it as a chronic illness and I'm also fearful the antimicrobials will trigger the RLS (I'm not starting for another week), however, I listened to a great podcast called The Healthy Gut that featured Angela Pifer (siboguru.com) and she said talked about how to prep the gut for the treatment, and I seem to be taking all the precautions, so crossing fingers.

I'm not 100% symptom free, but at least I have the stupid restiffic footwraps to tamp down on the remaining foot tingling in the meantime.

legsbestill wrote:Thanks for that information. Is the sibo diet similar to the fodmap diet which is used in the treatment of ibs? I have seen a number of people recommend that diet strongly when it comes to rls. I keep meaning to try it but haven't managed to get myself organised for it.

It is similar. What I've found to be really helpful is to eat a basic plain meal that is very similar every day, and then trying one thing different (they say that item should have 3 days to be tested, don't try something different every day). IE: chicken and white rice + 1 veggie. Chicken and rice likely won't trigger anything, but the veggie might.